Not coping so well


I’m so low at the minute and just want answers which don’t seem to be happening any time soon.

I was originally diagnosed with herniated discs due to aching leg, numb foot symptoms but after 2 months of treatment and a clear MRI I found myself very unexpectedly in the neurology clinic. I have developed further symptoms of severe back pain and bladder retention for about a week and now, well, nothing. It’s all pretty much gone apart from the odd twinge and I am sat here paranoid and worried to death!

The neurologist I saw said my weakness was very much improved to what he was expecting from my doctors referral and my exam was OK apart from finding a mild relative afferent pupillary defect in my left eye. I’ve not had optic neuritis(that I’m aware of)but I have seen an optician twice this year for intermittent blurred vision.

I have now seen the neuro-opthamologist who said I have very mild damage and slight thinning of the optic nerve. I have no idea what this means even after trying to Google! I am now waiting for Visual Evoked potential tests.

I had a brain MRI a few weeks ago and have rung for the results only to be told my neurologist has said he won’t report on it until he has the VEP tests so he has a clear picture of what’s been happening. I;m gutted! I just want to know if the MRI is normal or not, and I don’t even have an appointment for the VEP test yet.

I’m very down and don’t know what all of this means.

Thanks for reading x

Hi Kelly Lou, please keep your chin up, it’s a long process to be diagnosed or to dismiss Ms, I’m in same boat waiting for results on MRI and evoke potentials, the neurologist needs results from both to help with diagnoses, it’s better to have results then he may be able to see what is causing your problems rather than assuming with one result, if that makes sense

good luck hun

keep smiling


((Hugs)) KellyLou

I pretty much felt the same way when I was going through all the tests, but all you can do for now is go with the flow and look after yourself. Stress can have a big impact on my symptoms and one of the ways I try to get round it is by using distraction methods. Anything you enjoy doing will serve as a distraction - treating yourself, a good dvd and massive bar of chocolate perhaps…Every little helps!

In the words of my neuro; ‘better to get the diagnosis right first time round, rather than galloping off down the wrong road…’

Keep your pecker perked

Debbie xx

ooo I really understand what you are going through! I am waiting for a date to go in for a lumbar puncture and VEPs and I have still not heard anything since I received a letter some weeks ago from the Neuro saying there were some areas of high signal on my MRI and I need these further tests. . That is all I know and the waiting and not knowing is just awful. I am not sleeping properly as I think this is all on my mind. I also have a gastroscopy next week so am VERY worried about that. and I go on holiday in 2 weeks! I just want to run away from it all and hide!

I think the best thing to do is to try and keep busy and not dwell on it all too much. (easier said than done!)

take care

Thank you all for your support. Not that I’m pleased you’re in the same situation but it is nice to know I’m not alone with my feelings.

I’m going to see my GP this afternoon, not that she can tell me anything, but I need to discuss where I’m up to and let her know how it’s affecting me mentally. I’m concerned how I will get results as well. When I asked the neurologist if I would see him again his reply was ‘it depends on the results’. So how will I get the results? And if they are all normal what happens then?!

Thanks again x